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Crohn's and Total Colectomy

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Posted 12/26/2009 10:30 PM (GMT 0)
about a year ago, my husband had a partial colectomy due to a perforation relating to his crohn's disease.  We're considering having another surgery to remove his entire colon and HOPEFULLY be done with this awful disease.  Although he has Crohn's all of his symptoms have always been in his colon.  He's never had any issues with his small intestine or stomach.    For people who have had a total colectomy, did the disease go away?  Or did it begin to attack your small intestine as well?   I know the disease is very individual, and we plan to ask him GI and surgeon, but I thought it would be nice to get some opinions from people who have already been through it.    Thanks
Posted 12/27/2009 1:11 AM (GMT 0)
I will be Crohn's free for 4 years this Jan. 18th. My disease was only in my colon and my doctor did not expect me to stay in remission for any length of time...I cannot begin to tell you how happy I am to prove him wrong. It truly is different person to person but I can't deny that I now have a life b/c I had everything removed. Good luck with whatever you decide...I know it is not an easy decision to make.
Posted 12/28/2009 12:40 AM (GMT 0)
I'm sorry that your husband is battling Crohn's. It's an awful disease, but thankfully, surgery will improve his quality of life, at least it has for me.

I had Crohn's in the large intestine and rectum, and it has not shown up anywhere else since I had my colon and rectum removed 3 years ago. I haven't taken any medicine since surgery either, which is nice, since there can be many side effects from them.

My GI said that the chances were low that the disease would ever show up in my small intestine, since it was never there before, which was wonderful news. I have heard that approximately 40% of people with Crohn's only have it in the large intestine, and that if you have gone 7 years disease-free post-colectomy, you will most likely be disease-free for life. Now, that's what I've heard, so I don't know how accurate it is, but it sounds good to me. :-)

Good luck with your decision, and please ask us any questions you may have about the surgery and life with an ostomy, which, by the way, is very good. smilewinkgrin

Take care,

Cecilia
Posted 12/28/2009 4:22 PM (GMT 0)
My Crohn's started in my small intestine and I had a proctocolectomy in Feb 08. My C/R Surgeon indicated that it had been 9 years since I'd had any small bowel problems (colon/rectum was the current location) that I should be okay...10 years is the mark they look for...I am knocking on wood because, like Cecilia, I haven't been on meds and feel great:)

I went into my surgery with a positive outlook and will worry if I have to. I suffered for 20+ years and waited for the 'cure' to solve my problems. I don't have any aches/pains anymore and can do any activity.

Are you aware that some hospitals (teaching ones) will perform a J-pouch for Crohn's patients who have never had small bowel involvement? There is still a higher failure rate than for UC, but it is looking promising the further out the data goes!
Posted 12/29/2009 1:32 PM (GMT 0)
I've never heard that flchurchlady!!! Sounds good to me, too! If that 7 yr rule is true then I'm over halfway!!! I've not had any meds since my surgery but my doc wanted me on maintenance meds due to the severity of disease. However, nothing has any effect on me so I'm on nothing--doing great and loving it. I love hearing about other Crohnies staying in remission. :)
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